Updates 11-13-2014

Received a call from Jonathan at Congressman Cohen's office.  He is so nice and helpful.  Although, they seem to be giving him the run-around too.  He said in order to move forward they need a military questionnaire completed, signed, and sent.  We've done this at least five times since 2010.  The first was in 2010.  The second was in 2011.  The third and fourth were 2013 and 2014.  Now, they are requesting the information again.

• We filled this out at the VA and submitted it in 2010 
• The pension denial letter request - still no response from July's request.
• A representative from CHOICES came and hooked up a monitoring system for him in case he has an emergency, he just pushes the alert button....mind you...he may not remember he has this system at all :/.
• I compiled all of the information and sent it to Jonathan.  I sent him:
• The new questionnaire (with the same info from the last 5).
• A copy of the original from 2010.
• A copy of the NARA Vetrecs form (original)
• A copy of the follow-up request to NARA Vetrecs.
• A copy of the pension letter stating they are "working on it"
• A copy of the request for pension denial letter 

I hope this information will help.  I am going to call NARA again and call the pension request people again.

I will keep you updated.

Updates for today

October 28, 2014 - 

• Today I sent over the consent form to Congressman Cohen's office.
• While I was at the doctors office, I got a return call from Mike, the man who runs the group home.  I got the address and decided to do a little google-ing.  This is what I discovered.
• The little star hiding under the red balloon is the exact address - the two balloons are the crimes that have occurred there within the last three months.  

This doesn't look like a place for Dad.  Thanks anyway.  Also, I wouldn't park my car there either.

CHOICES program is extremely pushy.

Tonight I received a call from the Choices representative. It was 7:30 PM and I was in the middle of working on an assignment for my class. She asked me if I was able to contact the person named Michael who runs the group home in Whitehaven.  I did call him after she left the other day and I did not get a response. His voicemail was full.  I also spoke with a representative from Riverdale, the assistant living home, and she was very nice, however their prices are nearly $3000 per month. Because we got a response back from the congressman, with hopes, I would like to make sure that wherever he goes, that it's going to be safe and a place that has his best interest at heart.  It feels to me as though it's a money issue or a funding issue. They are in such a rush to put him somewhere that isn't safe.  I was a little apprehensive getting the state involved in the situation at all, but I seriously thought that this was going to be something positive. And she specifically told me that there are no other options except for this one house print. Otherwise he would be forced to be admitted into a nursing home which would restrict his access, and he would be treated like a dying patient, they also said they would drug him if he got irate.  

I don't feel comfortable with the home in Whitehaven. Simply because if you are from Memphis, you would understand Whitehaven is a very high crime area. They also do not have gates around the house so he will not be protected. It's not a dementia care facility.

I do not like the urgency that they're placing on making a decision on where he needs to be. Especially with a program name choices, one would think there would be more choices than one halfway house for the elderly.  In addition, the choices program pays the facility $139. If he were to go into an assisted living place they would provide $1100. So the rent, cable, utilities, and food would be paid for out-of-pocket. Out of his pocket.  The total for that house would be $340 out of his $598 a month.

This also means that in addition to him going from where he is now, with us, to a place with strangers, where I would have to visit there at least once or twice a week to do his laundry, this just doesn't make any sense at all.

The representative also mentioned that if I don't make a decision with some rapid response, he may lose the program and not be able to apply for it again.  She is  referring to having a decision made prior to the first of November!   They also do not provide furniture which means we would have to buy furniture to go in the room that he would be living in. All of his furniture was lost when the bedbug situation at his old house was dealt with.

This also means that we would have to spend the holiday weekend of Halloween, moving furniture finding a truck to use, making sure that he has everything he needs down there etc.  

Last Christmas Eve, I spent the entire evening cleaning his house and fighting with the security guards at his Federal housing unit because they were refusing to let him bring a new mattress in. We got rid of the old mattress because it was infested with bedbugs. They were going to make us wait until that following Wednesday and my father would've been sleeping on the floor.  I spent the entire Christmas Day crying because of the stress and the frustration from everything. I don't want to spend another holiday fretting.  

Congressman Cohen to the Rescue

Good news!  I received a call back from Congressman Cohen's assistant, he sent us a request form to start searching records!  He said they would help him!!!!  I'm so happy to finally have someone on his side!  Yay!

Update on VA records request for DD-214

I'm getting in the habit of recording phone calls.  This man was helpful, although the information and status of the URGENT request we submitted on July 16th is in limbo mode in their system.  The paperwork said to wait 90 days before inquiring.  90 days came and went on the 16th of this month.

Here is the original request:

Here is the e-mail stating they received the request.

Here is the conversation: conversation

I was on hold for nearly 20 minutes.  I cut out the hold music to save you the annoyance and anything regarding personal information.

Writing our Congressman

Yesterday, after speaking with the CHOICES representative, she suggested that I write the senator of our district.  This would be congressman Steve Cohen.  I've met him a few times, and he is a good man who really works hard to help people.  I hope this works.

• We met with yet another CHOICES representative yesterday.  This time, she scheduled the interview for Thursday, then called yesterday and said she was in the neighborhood...so I agreed, although it disrupted the plans for the day.  She asked the same questions the other two representatives did, and seemed very rushed for us to make a decision about where he will go, or what services he wants.  This is ridiculous because we didn't receive a list of facilities that accept the program until a few days ago and after calling all of them (as in my previous post), only ONE actually accepts this program.  The interview lasted two hours and they requested yet more records from the VA documenting his dementia needs. My frustration continues to mount.
• They offered another alternative, but only contribute $139.00 to the home.  This would be a home setting, with someone there 24/7.  Three "roommates" split the bills.  They would charge him a total of $340.00 a month.  However; this means that I write a check or get a money order for the rent, then over and above that pay $68.00 for cable, and utilities.  There is no housekeeping, so I would have to drive to Whitehaven (which is 30 minutes from my home) and do his laundry.  I just don't trust this, and I fear that he would wander, because he likes to take walks.  An enclosed facility would be better for his condition.
• Just spoke with the woman at Riverdale, and the pricing quote the CHOICES representative gave me was incorrect. It is around $3200.00 a month.  Nothing will happen with that place unless he gets a pension.
• Also, she mentioned that perhaps somewhere not in Memphis...like Jackson, Tennessee may have better priced facilities.  I just cannot believe there are no other options in this region that are reasonable.

Here is a copy of the letter to Congressman Cohen:

Dear Ms. Reynolds,

Thank you for reaching out to the Office of Congressman Steve Cohen.  For assistance, please contact Jonathan Donald here in our office at 901-544-4131.  Our office hours are 8 a.m. to 5 p.m. Monday through Friday. 

Location: In Tennessee
Meeting points: Hi Mr. Cohen,
I am writing because for the last five years my father has tried and failed to get his pension benefits from the VA. We do not know where else to turn at this point. His care worker through the CHOICES program suggested we write to you. I am his daughter and have done everything in our power to get his service records reconstructed so he can receive his pension/benefits and we get the run around. This all started in 2010. I've helped him apply and they send a letter stating "they cannot find his records." Apparently they were burned in the 1973 St.Louis fire, however; he has his honorable discharge papers and has been treated medically through the VA his entire life. He is now 77 years old and battling dementia. He receives a take-home of 598.00 for social security. It would be higher, but the SS office send 187.00 a month to my mother for past child support (you heard right). He has the qualifying symptoms for agent orange exposure, which he was exposed to at Ft. Dix and Ft. Drum, in 1959. He is now living with me, and requires 24/7 care because of his dementia, COPD, and recently diagnosed lung cancer. He was recently approved for the CHOICES program through TennCare; however, it will only pay $1100.00 of the cost for his care. Coupled with his social security, that would bring it up to around $1700.00 coverage. If the VA would grant him his pension, and back pension for all these years he's been living below the poverty line, finding the proper care for him would not be an issue. We refiled for his records over three months ago, and have not received a response, or a letter. The VA administration in the VA hospital on Jefferson will not let him apply for his benefits again without those records. They keep requiring a DD-214, and the records department keeps saying they cannot provide one because his records burned. In addition, the VA security arrested him for visiting the VA in "off" hours, I told them that he has dementia and they didn't care. Neither did the prosecuting attorneys, but after four months of court dates, they finally dismissed the charges. He needs help. I've created a blog, and have been documenting all of this. Can you help? What else can we do? We did talk to a lawyer at Morgan and Morgan, but they too asked for his service records. I am at a loss, and my father needs help. Thank you for your time.
Sincerely,
Tasha
Subject: Help with my fathers VA benefits
Comments: Created by IMA Incoming #2178.

Updates

October 21 - 

• Good news, he was approved for the CHOICES nursing care level. They are rushing a bit to get him admitted which always make me nervous, because to me that sounds more like a money issue than a care issue...given that I am taking good care of him.  Regardless, this is good news.  
• The CHOICES program will pay for $1100.00 a month.
• This is wonderful!  However, the facilities cost $2200.00 a month or more and even with his full social security check going to foot that bill, he is short by almost $700.00 - which puts us back to square one. 
• The VA records department has not returned our requests.
• Wrote Senator Steve Cohen and requested a meeting.
• Spoke with a lawyer and will set up a meeting for later this week.
• Not sure what to do at this point.  

The CHOICES representative gave me the names of four dementia care facilities.  Not very promising, given that the woman at Apple Grove listed the cost at nearly $4600 a month, and the woman at Cordova Estates said that the only place that accepts CHOICES now is Riverdale.  Riverdale is reasonable, but still $500.00 over budget.  If they VA would approve his pension all of this would not be an issue.

Here is the conversation with the woman at Ridgemont Manor - here

	Phone		Dist.	Cost	Private	Semi	Availab.	Notes
Apple Grove, 3575 Hacks Cross Rd, Memphis, TN 38125 http://www.applegroveliving.com/	901-755-1244		28		$4595	$3595		Diane
Riverdale, 6880 East Raines Road, Memphis TN 38115 http://www.brmch.com/riverdale/riverdale-center.html			26	2200	Yes		Yes
Cordova Estates, 1535 Appling Cart Lane, Cordova http://www.brookdale.com/communities/emeritus-cordova/	901-377-7500		22	Don't accept choices anymore
Ridgemont Manor, 3805 Ridgemont http://www.ridgemontmanor.com/	901-384-9205		16					Sounds like they are drugs

Updates

September 16 -

These were supposed to be on a CD/DVD.  I am now tasked with sorting through this pile to find the information we need for tomorrows interview.

• We went to pick up the file - which was supposed to be on CD, and instead we received this stack.  
• Today I called the VA records department again to figure out what happened to the record request.  Again they are telling me that they were mailed out on July 24.  Then again she says that her records show that they were picked up by the individual.  Nope.  None of that happened.  
• Rosa, once again is insisting that someone picked up his records and they do not allow records to be released without showing an I.D.  I've been with my father 24/7 since July 4.  We did not pick them up, they were not mailed.  
• Rosa finally said that she will hit "print" again.  "You can pick them up today, all I have to do is push print."  She said she "closed the record" on July 24th.  She obviously made a mistake doesn't want to admit that she did.  She said someone showed a picture I.D. or the records, which makes me believe that someone stole my fathers identity.
• CHOICES appeal appointment is tomorrow.  I am trying to get the records printed out prior to that appointment. 

We still haven't heard back from either of the record departments we faxed regarding his pension.  Service or non service related.  No DD-214.  Nothing.  

His condition is worsening.  He has another doctors appointment in early October.

More Runaround...

The past four weeks have been mostly wait and see.  

CHOICES - He was approved for the program, however, not for nursing care level.  I discovered the reason.  On August 6th, we had an appointment with his primary doctor.  I described his needs and the doctor had the nerve to say "just because he makes bad choices, doesn't mean he has dementia." Which made me laugh out loud, although I didn't mean to be rude, this was very comical to me.  When I mentioned that he was diagnosed with dementia in 2010 and the very definition of dementia is a progressive degenerative disease....he updated the most recent diagnosis to include dementia.  Not in enough time for the people at CHOICES to see it.

They declared him a level 8 and he needs a level 9 to qualify for nursing care

We now must appeal this ruling with the updated diagnosis.

In the meantime, we are still waiting on copies of his medical records.  On August 15th, I called to check the status of these records we requested nearly a month and half ago.  At first they said they don't have a record of the request, then they said they sent them out on 7/24/14 - yet we never received them.  Then she said she left a message for the clerk.  When the clerk called back, she said that WE PICKED THEM UP.  We did not.  

I called to file a complaint with a patient advocate, left a message.  It took her a week to call me back, and when she did, I missed the call.  

Growing weary.

Today we successfully faxed over the records request again.  

In the midst of all of this.  I found out I have cervical cancer stage 2.  Luckily its treatable early!

Updates

I am updating the timeline section of my blog everyday - please check the timeline section and links sections for new information that I've obtained.

July 23 - 

• Spoke with Priscilla Bobo from the Choices program today - perhaps the first light of hope.  She  is going to help him apply for TennCare/Medicaid which will help pay for nursing care.  He has an intake specialist named Frankie who will be here tomorrow at 2pm to do an evaluation.  They are asking for three months of bank statements and proof of identification.

• Spoke with Tim Murphy from Ft. Drum - he does not have any service records and stated that we need to file for his DD-2214 through a website called archives.gov.  

Wandering

This has been an issue since he came to live with us on July 4th.  He has wandered off four times.  The most recent being today.  He walked out while I was in the bathroom.  I jumped in the car and rode around for twenty minutes searching for him.  Prior to that, I went into his room and noticed he left his wallet, which has my phone number in it.

He's "taken walks" three  other times.  The first time he convinced me he could find his way back.  I showed him where the store was and gave him directions.  It is only a block away.  I waited 20 minutes to see if he could find his way back on his own (like I said, he is very convincing!).  After 30 minutes, I got a call from a stranger and went to pick him up.  He was about a mile away.

The second time, he went off while I was not paying attention.  He likes to sit outside in the back yard and watch the birds.  I was doing dishes and cleaning, then noticed he was no longer there.  This time, I called police because despite searching all the main and side streets, I couldn't find him.

The third time he snuck off, I found him with 10 minutes.

Today he was three miles away, in a bad part of town, in the middle of traffic.

He needs help! you say....
He needs to be in a home! you say...

I agree, but we cannot afford assisted living, and because he has no Medicare or Medicaid, there is no help paying for nursing care.  The VA is still sitting on his pension after four years of denials and 'lost" service records.

These are the issues a caretaker faces, and if you are an untrained layman, it makes life extremely difficult. Not only is it dangerous, it shouldn't have to be this way.  However; as you have seen from my other posts, long-term nursing care and custodial care are not covered by Medicare or Medicaid.

Friends have recommended these products and I am recommending them to you!

Pocket Finder - A GPS system for children.

Locator - For Elderly

The second option may seem like a benefit, but my father cannot even correctly turn the volume up on the TV, and I imagine he will press the wrong buttons and summon the police too often....sigh.

I plan on purchasing the pocketfinder because it is simple.

Stealing

Yesterday I noticed my jewelry was missing.  It isn't expensive jewelry, just a few bracelets and necklaces I set aside to repurpose and sell on Etsy because I am housebound with my father.

After looking around his room I noticed a few of my cameras, and other items he grabbed from throughout the house...sigh.  I found my necklaces in his briefcase.

I've been thinking about how to approach the situation, but it seems like a fruitless endeavor.  I mean, even if I ask him to refrain from pocketing my jewelry, I doubt he will remember.  So here are a few recommendations if your loved one with dementia begins to steal or misplace valuables.  These are obvious, but perhaps you can do this prior to caretaking to avoid the problem.  I had NO IDEA this would be an issue.

Recommendations:

• Lock your valuables in a safe place.
• Lock access to rooms where valuables are stored.
• Take Inventory of valuables so you know if they go missing.
• Talk to your loved one about taking items without asking.

Easing the Journey of an Alzheimer's or Dementia Caregiver

In 2008 my father lost his wife to cancer.  His wife was his primary caregiver and best friend.  My journey with helping my father began in 2009 and continues today.  Most of us are busy with our own lives, whether it is working full-time, raising children, or owning a business.  When one becomes a caregiver of a dementia or Alzheimer's patient it can significantly disrupt the peace in a family for several reasons.

Although we hate to admit it is a burden to care for a loved one, it can be daunting, stressful, and frustrating.  If you are reading this, and you have a parent with these diseases, I recommend you put your affairs in order now to ease the burden on your family when the time comes.

I am writing this guide to help individuals and families with little to no income and no family support work through the kinks and get the help you need to help you take care of your loved one.  Believe it or not, you may be the only person who will help your family member.

I am a single mother, in school full-time, and have minimal income from coaching junior roller derby.  My family has literally disowned my father and sent him to live with me in 2009.  It has been a struggle ever since.

I hope this guide helps those with minimal resources find help with your loved ones.

The full story of our journey is in the Story tab - I will have it updated tomorrow.